Q: Ovarian cancer is known for having very common symptoms. What was your experience with the symptoms and being diagnosed?
A: The most common symptoms are: indigestion/nausea/heartburn, feeling full quickly or lack of appetite in general, fatigue, abdominal/pelvic pain, bloating, urgency or increase in frequency of urination. Other symptoms can include back pain, constipation, menstrual changes, and painful intercourse. The problem is that most of these symptoms can be attributed to a number of other non-threatening ailments and are treated as such initially. For example, a patient presents with indigestion/heartburn, lack of appetite and fatigue. Many doctors will not jump to the conclusion that it is ovarian cancer. Most doctors will treat those symptoms as related to acid reflux/heartburn and likely start a course of medicine (either over the counter or prescription) to treat the symptoms. If a patient presents with bowel issues, maybe they are diagnosed with irritable bowel syndrome or some other ailment and are treated in that manner first. In these cases, there are many months of delay until actual diagnosis waiting to see if the prescribed course of treatment works. These months of delay are critical. It can mean the difference between having a 27% survival rate of 5 years vs. 93% survival rate of 5 years. Additionally, it is commonly known that women often do not seek medical attention right away for themselves, whether they are busy with careers, family, etc., it has been shown that women themselves can delay seeking medical advice, putting the well-being of others before themselves.
My first symptoms were: bloating; indigestion/acid reflux; and abdominal pain. I can recall driving to court in North Jersey on a Friday in the summer for an oral argument. Upon my arrival at the courthouse, I made a stop in the ladies room and when I tried to button my pants, they were extremely tight. I remember saying to myself, “I don’t remember these being so tight when I put them on this morning…I really need to get back to the gym!” Then the very next day came the severe indigestion (something I had never experienced before) and feeling full after only taking a few bites. Then that evening I had extreme abdominal pain which I thought was digestive/intestinal in nature. I felt a little better the day after that, but in the following 2 weeks the bloating was noticeably worse to the point that I could only wear dresses and skirts, none of my pants would button (or if they did, it was very uncomfortable) and I was extremely fatigued (much more than usual). The Monday after the symptoms started, I made an appointment with a gastroenterologist, but could not be seen for a full two weeks. All along I assumed that I had diverticulitis (a condition that does run in my family). I never made it to that doctor’s appointment…the pain became so crippling the day before my scheduled appointment that I went to the emergency room and the rest is history. Ironically, a few days before my scheduled doctor’s appointment my mom asked me if I wanted her to come to the doctor with me. My response was, “No, I’ll be fine. Its not like they are going to tell me that I have cancer.”…I couldn’t have been more wrong…
I spent 8 hours in the Emergency Room undergoing various tests and waiting for results and was eventually discharged in the middle of the night and told to follow up with my regular OB/Gyn the next day regarding a mass on my right ovary, however, I returned to the emergency room just a few hours later at 7 AM due to extreme nausea, vomiting and pain. It was then that I was told I needed surgery to remove a mass the size of a football from my right ovary and that the surgery needed to be performed by a specialist that they did not have at my local hospital and that a transfer to an out-of-town hospital was necessary. During the ensuing additional 9 hours in the emergency room waiting for a bed to open up so that I could be transferred, doctors kept saying “usually when masses are that large, they are benign and not cancerous”, which made me hopeful that was in fact the case. Unfortunately, it was not.
After I was transferred, more tests, more paperwork, visits from doctors, nurses, student doctors, residents, and fellows ensued in the next 6 hours and at exactly 12 am on Saturday, August 12, 2017, I hugged and kissed my parents as I was rolled away to surgery unsure if when I woke up I would be told I had cancer and whether I would ever be able to have children. It’s funny what your mind remembers. As I was going “to sleep”, in the back of my mind I knew that if my surgery was only 3 hours and I woke up around 3am, then there was no cancer, but if it was longer than I would know that I had cancer. According to the doctor who was with me when I woke up…the very first words out of my mouth were “What time is it?” and his response was “7 o’clock”…he didn’t have to say anything else, I knew at that moment that I had cancer…
Q: What are some common misconceptions with the process of being diagnosed with and going through cancer?
A: All I can really say is that even two people who suffer from the same type of cancer can have two totally different experiences and even treatments. Everyone’s experience is different and how they cope and recover can differ vastly. When supporting a friend or family member with any cancer, you need to be observant and take your cues from that person.
Q: What things did you do during the process of being diagnosed and going through this experience that help you cope and maintain your mental well-being?
A: My diagnosis was a little different than most. This was not a case where imaging was done and I was brought in to a doctor’s office and told that I had cancer and then had to time to plan and cope before surgery, etc. In fact, my entire family knew that I had cancer before I did. Going into surgery I knew it was going to be a minimum 3 hour surgery and potentially longer depending on pathology results. The process as explained by the general surgeon would be that he would start the surgery and remove the mass, the mass would be sent to pathology for immediate testing, if cancerous cells were found then the gynecologic oncologist (never knew such a specialty even existed until that day) would take over and life-altering decisions would need to be made. If it was cancerous, fertility-sparing surgery vs. total hysterectomy would need to be decided and all these decisions would need to be made by my parents while I was under anesthesia. I did not yet have any children and so this was an important decision for me. It was not until I woke up and learned that my surgery had been 7 hours long and that I had cancer, but they were able to perform fertility-sparing surgery. I had to wait an additional 12 days to receive the pathology results that would ultimately determine my treatment path.
Obviously, I did not have any time to process between diagnosis and surgery. I had to process afterwards which has been difficult. To this day, I remember what was going on each day of the 2 weeks leading up to my surgery and every milestone and appointment in the 3 years since my surgery. I remember it all like it was yesterday and I relive it all every year. I know it sounds morbid, but it’s what I do. I did try to attend some support groups but unfortunately, due to my rare diagnosis in my 30’s, the others in the group did not have the same fears and concerns that I did as they were already parents and grandparents and at different points in their lives.
Q: What one thing do you want people to know about ovarian cancer that will motivate them to raise awareness and funds?
A: Ovarian cancer (and gynecological cancers in general, i.e., uterine, cervical, endometrial, etc.- this does not include breast cancer) are underfunded relative to the number of new cases, deaths and years of life lost, meaning they receive disproportionately less funding as compared to some cancers that receive more funding relative to newly diagnosed cases and deaths. Underfunding can have negative impacts on research, drug development, new treatment protocols and number of drugs approved. Studies have shown that one of the reasons certain cancers are underfunded is that there is a stigma associated with certain types of cancers. In the case of ovarian cancer it involves discussions of the female reproductive system which may be embarrassing or uncomfortable to some. Survivor advocacy groups are trying to break this stigma so that it may be possible to raise additional money for research which would then lead to new and more effective drugs and treatments. Without research, nothing will change, the mortality rate will remain the same.
Q: What pieces of advice would you give someone that has just been diagnosed with cancer?
1- Know that every emotion you feel and every thought that you have is 110% valid. Everyone thinks a little differently or copes a little differently and your thoughts and feelings should be respected and never be downplayed by anyone.
2- Arm yourself with as much knowledge as you can (from reputable sources and publications- watch out for social media support groups, initially) and use that information to ask questions (even those that seem obvious or silly), and always listen to yourself. My doctor still jokes with me today that my family spent 7 hours doing research while I was in surgery and when she came out to talk with them they “grilled” her with difficult questions after she just performed a multi-hour surgery in the middle of the night. On my first visit with her, I came with 2 pages of questions written on legal pad. I believe that my knowledge and the questions that I asked ultimately led me to make the decision that chemotherapy was not right for me…so far it has been the right decision. Had I not done my own research, I may have just “gone along” with the “recommended”, conservative protocol of 6 rounds of chemotherapy, which may or may not have worked, but certainly would have had other negative effects. My gynecologic-oncologist repeatedly tells me that my family and I have asked her some of the toughest questions she has faced from families and patients!
3- Trust your care team. If something does not feel right or “click” don’t be afraid to get a second or third opinion. I was lucky. I really did not have a choice who did my surgery due to the nature of the emergency. Of course I could have changed doctors afterwards and in fact I did obtain a second opinion from one of the top cancer hospitals in the country, and while their analysis of my situation was the same as my surgeon’s, the feelings I had after leaving that hospital were just not the same. My gynecologic-oncologist is so amazing and has the best bedside manner I have ever encountered. She listens to everything I have to say, whether related or not, and she does not rush me along. She genuinely cares for me. She saved my life once and trust with every fiber of my being, that she has my best interest at heart.
4- Do not back down when you face obstacles. I continue to have battles for insurance coverage of certain things. Less than 1 year after my surgery, I received a denial for a pelvic MRI which said “You have a personal history of ovarian cancer…your condition does not warrant the test requested…”. That was an outrageous and infuriating denial to receive. I was also denied genetic testing despite the fact that if I had certain genetic mutations, I would have an increased risk of other cancers that could be prevented. It took 4 rounds of appeals to get the genetic testing approved. I wanted so bad to just give up and stop fighting. It was such an energy and time stealer, but I never gave up and in the end, I received every single test prescribed by my doctor.
To support the research of ovarian cancer, please head to https://events.ovarian.org/nocc/Donate to donate.